Neurodiversity Forever; The Disability Movement Turns to Brains

By AMY HARMON

Published: May 9, 2004

NO sooner was Peter Alan Harper, 53, given the diagnosis of attention deficit disorder last year than some of his family members began rolling their eyes.

To him, the diagnosis explained the sense of disorganization that caused him to lose track of projects and kept him from completing even minor personal chores like reading his mail. But to others, said Mr. Harper, a retired journalist in Manhattan, it seems like one more excuse for his inability to ''take care of business.''

He didn't care. ''The thing about A.D.D. is how much it affects your self-esteem,'' Mr. Harper said. ''I had always thought of myself as someone who didn't finish things. Knowing why is such a relief.''

As the number of Americans with brain disorders grows, so has skepticism toward the grab bag of syndromes they are being tagged with, from A.D.D. to Asperger's to bipolar I, II or III.

But in a new kind of disabilities movement, many of those who deviate from the shrinking subset of neurologically ''normal'' want tolerance, not just of their diagnoses, but of their behavioral quirks. They say brain differences, like body differences, should be embraced, and argue for an acceptance of ''neurodiversity.''

And as psychiatrists and neurologists uncover an ever-wider variety of brain wiring, the norm, many agree, may increasingly be deviance.

''We want respect for our way of being,'' said Camille Clark, an art history graduate student at the University of California at Davis who has Asperger's syndrome, a form of autism often marked by an intense interest in a single subject. ''Some of us will talk too long about washing machines or square numbers, but you don't have to hate us for it.''

Last month, Ms. Clark helped start an Internet site called the Autistic Adults Picture project (www.isn.net/jypsy/AuSpin/a2p2.htm), where dozens of people list their professions and obsessions next to a photograph. The idea is to show normal-looking people, whose peculiarities stem from their brain wiring -- and who deserve compassion rather than exasperation.

Overcoming the human suspicion of oddity will be hard, the more so because the biological basis of many brain disorders can't be easily verified. Usually, all anyone has to go on is behavior.

''It's a tough one,'' wrote one participant in an online discussion of Asperger's syndrome. ''Was that woman,'' he asked, just ''unwilling to think about others' feelings, not caring about whether she's boring me with the minute details of her breakfast wrap?'' Or, he asked, was she ''really truly incapable of adapting herself to social mores?''

Science is beginning to clear up such questions, said Dr. Antonio Damasio, a neurologist at the University of Iowa Medical Center, by identifying distinct brain patterns and connecting them to behavior. But, he added, only society can decide whether to accommodate the differences.

''What all of our efforts in neuroscience are demonstrating is that you have many peculiar ways of arranging a human brain and there are all sorts of varieties of creative, successful human beings,'' Dr. Damasio said. ''For a while it is going to be a rather relentless process as there are more and more discoveries of people that have something that could be called a defect and yet have immense talents in one way or another.''

For example, when adults with A.D.D. look at the word ''yellow'' written in blue and are asked what the color is and then what the word is, they use an entirely different part of the brain than a normal adult. And when people with Asperger's look at faces, they use a part of the brain typically engaged when looking at objects.

Dr. Damasio and others compare the shifting awareness about brain function to the broader conception of intelligence that has evolved over the last two decades, driven in part by the theory of Howard Gardner, a Harvard education professor, that children who don't excel in ''traditional'' intelligence -- the manipulation of words and numbers -- may shine in other areas such as spatial reasoning or human relations.

Skeptics, like Mr. Harper's family, and some medical professionals argue that clinicians are too quick to hand out a diagnosis to anyone who walks through the door. In an effort to rein in the number of diagnoses, the American Psychiatric Association imposed a new criterion in its latest edition of the Diagnostic Statistical Manual: an individual must now suffer from ''impairment'' to qualify as having one of its 220 psychological disorders. ''We're not adequately differentiating normal from pathological if we just use the criteria that are in the syndrome definitions,'' said Dr. Darrel A. Regier, director of research for the American Psychiatric Association.

The definition of ''impairment,'' however, remains vague. And many clinicians chafe at the manual's rigid diagnostic criteria.

''Say the diagnostic category for a depressive disorder is four out of eight symptoms, and you have two,'' said Dr. John Ratey, a Harvard University psychiatrist. ''What are you, just miserable?''